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Monthly Archives: September 2012

Yes, it has been awhile since I have posted on here. I apologize if that caused consternation or concern anywhere but the long and the short of it is that I just didn’t feel like it.

The good news is, today I do and it’s because there may be something like actual improvement to discuss. I’m trying not to get too cocky about things but I am cautiously optimistic, which is about a billion times more positive than I have been in the last couple of weeks.

A big chunk of my improved outlook is because the fucking tube is gone! Yes, the blasted feeding tube that nearly got me killed in the hospital (ripped my bowel, emergency surgery, etc.) and has been the bane of my existence since with leaking and pain and just a general sense of “wrong” was removed yesterday by Dr. Frenchy.

Now, before I get to the positive part, I want to discuss the removal of tubes and the lies that health care professionals seem to be required to tell about same. When I was in the hospital I had two drain pouches that were collecting excess fluids from my abdomen. Those pouches were connected to tubes that went into my body on the right side, a few centimeters below the rib cage. The day before I got out of the hospital it was time, finally, to remove the pouches and the tubes, for which I was extremely grateful.

The nurse told me that I would feel a pinching and pulling sensation but that it shouldn’t actually hurt.

Whether or not she was lying intentionally is unknown but she was lying. It hurt. A lot. Like to the level where I screamed and told her to stop. An injection of dilaudid (40 times more powerful than morphine!) later I didn’t give a rat’s ass and she pulled the tubes out.

So when I got to Dr. Frenchy’s office and he told me it was finally time to remove the feeding tube and then said, “You’re going to feel some pulling” I was suspicious but willing to give him the benefit of the doubt. After all, he was removing the fucking tube – I was the lion having a thorn removed from my paw by the helpful mouse and that was good enough.

Now that I have had this done twice, I want to state for the record… if you are told by a health care professional that a tube removal is not painful, they are lying to you. A lot.

Liar! LIAR!!!

As he pulled on the tube, the pain was stunning – consciousness threatening. I actually said, “I think I’m passing out” because the walls of the examining room seemed to fold in on themselves like origami. However, I managed to hold on and then restrained myself from punching Dr. Frenchy, but the latter was mainly because of the amount of blood and other stuff that was coming out of the wound.

Then came the kicker… Dr. Frenchy told me that the oozing and draining could go on for weeks. WEEKS! And that if it didn’t stop, it probably meant that there was a small leak somewhere inside and that he’d have to go back in surgically to fix it. The thought of having to deal with the bandages and the pain and the discomfort for weeks only to have to have another surgery to correct it nearly crushed whatever little bit of my spirit was left.

I got home and pretty much went to bed – it was that exhausting (both physically and mentally). When I got up later in the day the bandages were soaked and I had to change them several times. Although I was thrilled that the fucking tube was gone, I was practically inconsolable over the idea that this is what I was going to have to face constantly for the foreseeable future.

But then a strange thing happened… I got up this morning and the bandage wasn’t soaked through. In fact, it was the least amount of “stuff” that had been coming out of me in weeks. Beyond that, the odd hard spots that had formed around the leaking incisions – hard spots that when pushed on would cause more drainage – were smaller and less painful.

And most importantly, I felt better. I don’t know if it was strictly a mental thing or if there was some overall physical impact, but I got up this morning and didn’t feel like shit. Let me be clear – I’m not ready to go run a marathon, but there was a difference.

That’s really all I’ve been looking for: some sort of evidence that things are getting better. The last couple of weeks have been very status quo in terms of my recovery and that has frustrated me to no end. Seeing an improvement, no matter how small, is encouraging.

I went to see another of my doctor’s today and she was very pleased. Her theory – and I think it’s a good one – is that there was a leak around where the tube went into my bowel. But when the tube was removed, it not only is healing the hole where the tube was but the leaking area as well.

I am cautiously optimistic that this is going to be the thing that allows me to turn the corner. I haven’t turned the corner yet but I can see the corner now and it appears to be clear of hookers and junkies so when I get to it, I should be able to turn it without too many problems.

Now, I just need to find the corners for the eating issues (still having food drama), the breathing issues (one of my lungs feels constricted), and sleeping issues (severe dry mouth wakes me up about every 45 minutes all night long) then I’ll be in good shape.

The surgery was three weeks ago today and the question that keeps running through my mind is this: why aren’t I all better yet? I mean, I understand that it was a huge surgery with complications that could’ve killed me and that I spent 6 days in the Intensive Care Unit and a total of 13 days in the hospital and that I’ve only been out of the hospital for a week, but really, shouldn’t all of this be done with by now?

Recovery takes time, everyone keeps saying. Be patient; it will get better. Bite me. This has been the hardest thing I’ve ever had to deal with (at least on a physical level and pretty darned close on an emotional one) and after three weeks I’m ready to feel better, move on, and be shed of the pain, discomfort, exhaustion, and everything else that is keeping me from returning to whatever I called a normal life.

But it is not working out that way, my will and desire be damned.

The biggest problem I am having is with the fucking feeding tube – you know, the one that I partially ripped out while struggling against the ventilator that they had to go in for an emergency surgery to repair? It’s still there, hanging out of my abdomen like a pus and blood filled USB cable (how’s that for imagery?). Dr. Frenchy, who I saw on Wednesday, says that it needs to stay in place until it scars over and then they can remove it. Do it too early and place where it goes into my intestine can crater, collapse, and kill me. This means that I will have the gory USB cable in my side until at least the 17th of September, which is when my next appointment with Dr. Frenchy is. To say that I’m unhappy about this is the understatement of the new millennium.

Oh, and the way in which they remove it? They just pull it out. Seriously – grab it, yank it, done. This is, of course, if it doesn’t just fall out by itself, which apparently is a distinct possibility.

In the meantime the place where the tube goes in and the small incision next to it continue to leak and ooze unpleasantness and, now that they have removed the stitches around the tube, there is a decent amount of pain added into the mix. I have to change the dressing on the two wounds three times a day and each time is a challenge to move the tube as little as possible because any little variation in position causes a stab of major ouch.

(tubes – get it?)

Food continues to be a challenge. I have found some things that I can eat and digest without too much drama – applesauce and peaches are at the top of the list – but everything else is a crapshoot. This is why I have lost close to 40 pounds in three weeks. Last night I managed to have some turkey meatloaf and some instant mashed potatoes and that went pretty well. Today for lunch I had a little bit of oven-roasted turkey on a piece of bread and some leftover noodles and it sent me to bed with lower-intestinal pain for almost an hour. It’s impossible to know what’s going to work and what isn’t, but the doctors swear this is going to get better, it’s just going to take time.

There’s that time thing, again. Annoying, isn’t it?

The good news is that I was cleared to do the basics like driving, showering, light lifting, and otherwise tending to myself. I’ve done a little of each and although it ends in me being exhausted, it’s nice to be kind of self-sufficient. I sent my parents home day before yesterday and they are relieved to be back in their own place and I am relieved to have mine back under my control. I deeply, endlessly appreciate them giving up three weeks of their lives to basically sit around and worry about me but I think all of us agreed that it was high-time to return to our regularly scheduled programming.

I have also returned to work in a fashion. I’m certainly not fully back up to speed and certainly not going into the office, but working remotely for bigger and bigger chunks of each day is helping my brain from turning completely to mush.

So yes, I guess there is progress, but I’m just having a very hard time recognizing it and embracing it. It’s much easier to focus on the pain/exhaustion/digestion issues because those are so much more obvious than the little victories like being able to lather areas of my body in the shower that have been in need of a good lather for several weeks. The latter feels good but it only lasts for a few minutes while the pain from eating a piece of bread lasts for hours.

It bums me out but I’m trying not to let it weight me down to the point that the recovery will take even more time than it would’ve otherwise. I understand that three weeks is not enough time to heal from something like this. But if we make it to four weeks and things are not substantially improved, the whining level is going to go up a lot. You have been warned.

I want one of these. Being in the same room as one would make me sick, but I really, really, really want one.

Except for some flashes here and there, pretty much everything during my six day stay in the ICU is lost to the haze of pain and self-administered morphine in which I was enveloped. Apparently people came to visit me and brought me presents but I remember mostly nothing about it.

Case in point: my friend Steve stopped by on Sunday, two days after the surgery, before the second surgery. He brought me a CD case shaped like a giant cheeseburger and some Mardi Gras beads, all of which were tied in some meaningful way to his late wife and my late best friend Mary. Apparently we had a full conversation (well, as full as I could manage), I was relatively lucid, and a good time was had by all.

I remember none of this.

What’s even weirder is that I didn’t question where the giant cheeseburger came from. It was just there – a part of my recovery just like the self-administered morphine.

A gift from the Hamburg, PA Hamburg-er Festival

So therein lays your opportunity. If you feel the need to claim some sort of sick friend credit you don’t deserve, just tell me you came to visit while I was in the ICU. I’ll have very little choice other than to just believe you.

In other news, today is my birthday. 46 to be exact. Not exactly the way I would’ve liked to be spending it but I suppose the alternative is not much better.

Things are kind of in the blah zone right now in terms of the recovery.

Friday and Saturday there was a fear that both the tube site and an incision next to it were infected. The home care nurse came in on Saturday to look and change dressings and decided to call the doctor. His determination was to have the nurse go ahead and remove nearly all of my surgical staples. That would 16 in all, minus those holding the thoracotomy scar together and the 4 that were missed because they were under a bandage.

To say that this hurt is an understatement of epic proportions but it was more of the dying of a million little cuts type of pain than the type of pain I’ve been in previously during all of this. I made noise, cursed a bit, and said “ow” a lot but it got done.

There was a lot of… well, let’s just say “stuff”… that came out of the wound near the tube and from around the tube itself and that continues to today. Less, but still there. Happy birthday!

I’m also having some weird numbness and aching type pain in my chest near the breastbone. This seems to be mostly related to where they had some drainage tubes and as long as I keep in a relatively stretched out position and keep breathing fairly deeply (still a bit of challenge) it’s not debilitating.

What is more than a bit of a bummer, as it has been from the very beginning, is my new relationship (so far) with food. I’m still on a soft diet, which basically means I eat normal-ish food but the soft varieties of it. Yogurt for breakfast; apple sauce for a mid-morning snack; some oven roasted deli style turkey (maybe in half-a-sandwich fashion) and some soup for lunch; an Ensure like shake in the afternoon; and something like a light pasta or some ground turkey and mashed potatoes for dinner. The problem is that my body does not like food – at all. I eat and within a few minutes I start to feel bloated and distended. Everything bypasses my stomach and my upper intestine and just sits down in my lower where it tries to get processed.

Basically I eat and then I feel like shit for the next 30-45 minutes and then it’s okay-ish again. This will hopefully get less severe as my innards heal but it is probably going to be a factor moving forward to some degree or another. Again, I say, Happy Birthday!

The outward result of the surgery and food issues is a pretty radical change in my appearance. I have lost more than 30 pounds in just over 2 weeks and, at least in my eyes, appear downright gaunt especially in the face. I don’t recommend this is a weight-loss strategy but it is a very effective one.

Other than that, I just continue to be very, very tired all the time. Yesterday I managed to take a walk down the block and back and then went with my Dad to the grocery store. Afterward I needed a nap. Unfortunately sleep is not coming easy or lasting long so there is an exhaustion factor that I just can’t shake.

But I think that every day is at least microscopically better in some way or another so hopefully this will continue. Those who know me well know that patience is not a strong suit so I am having a hard time accepting that everything is not back to “normal” after a little more than 2 weeks post major surgery. I’m not saying I was thinking I’d be ready to go out drinking and carousing on my 46th birthday but I did, at least, hope that I’d be able to digest apple sauce. Oh well… maybe next year.